So what's been up? Lots. Evan has been a busy bee since my last update. This past weekend we participated in the Tampa Congenital Heart Walk. This is only the 3rd year there has been a walk in Tampa and I was sad to see few participants/supporters. Next year I am making it a priority to do what I can to shine some light on the event. Evan had a great time riding around the track in the stroller while I huffed and puffed to keep up with Elli, who insisted on running the entire first lap (1.5 miles!). She definitely took the walk seriously :)
Evan has also dealt with two ear infections and what was suspected to be croup (but it wasn't). He was a grump for sure but did well, considering. It's been unseasonably warm here in Florida these past few months and we are definitely taking advantage of the awesome weather! We have made several trips to Disney and Aquatica water park. Evan loves Disney days and had a blast meeting Mickey and Minnie for the first time. He gave Minnie a big, wet kiss on her nose :) So stinkin' cute! He loves the rides and enjoys watching his sissy get so excited. The water park is hit or miss, ha! He loves splashing in the water, but does not like the super speed "lazy" river because you get sprayed with water. He did, however, fall asleep in his life vest after one trip around in the water and poor Dad had to go sit with him while still in the water and keep his head afloat while he napped.. Oh the things we do for our babes.
Evan had his Cardiologist appointment last week and got some really wonderful news. His heart function looks fantastic and his leaks are still very minor. We will be keeping him on the enalipril and go back in 3 months again! It's so weird to think just a year ago we were scheduled every 2-3 weeks for appointments! And I just have to say, I absolutely love the staff at his Cardiology clinic. The nurses and receptionists are wonderful, they always take the time to entertain Evan and do whatever they can to make sure we are comfortable during the visit. His sats were good and he sat thru the EKG completely still while watching his favorite nurse dance around and blow bubbles, lol. She is the best! His echo lasted almost 30 minutes and thanks to Yo Gabba Gabba, he cooperated long enough to get the important shots. We also visited the Pediatrician for Evan's 15 month check up. He is 24lbs 120z and 31.25" long. He is continuing physical therapy until he meets his new set of goals and received a referral for speech therapy. We also got a referral to the eye DR because Evan's eyes seem to cross when he focuses. Praying it's all in my head and he is just fine..
Now, on to the AWESOME news! After a few months of literally no progress in physical therapy, Evan has finally decided he wants to move and has been trying so hard to catch up! He is able to pivot side to side on his belly, can get to the sitting position from his belly, can get down to his belly from sitting, is pulling up on the couch, taking big steps while holding hands, and started crawling today!!!!! I put two of his toys about 6 feet away from him and with some encouragement, he crawled all the way over to them! Oh, the tears of joy, such a simple milestone that has been a difficult mountain for my dear son to overcome.. It's just the most wonderful feeling to see him accomplish something we have been working so diligently on! I cannot wait for him to show off tomorrow in physical therapy! :)
Thank you all for continuing to send positive thoughts and prayers for Evan and our family. It is so great to have such an amazing support system <3 Much love!
 |
| The gang w/ Mickey & Minnie |
 |
| Water park! |
 |
| My monkey :) |
 |
| Evan @ the Tampa Congenital Heart Walk 2012 |
Hi, my name is Pat and my grandaughter was born with HLHS. At 2-1/2 she is facing her 3rd surgery in a couple of weeks. Like Evan she is a real fighter and has shown such amazing courage and strength in her short life. I was not aware of the walk for CHD in Tampa. I know we could have gathered a few people to participate so please keep us in the loop for this and other local events that you hear about.
ReplyDeleteOur little girl had difficulty focusing and we thought she had "lazy" eye, however, the eye doc diagnosed her with extreme far sightedness. Her eyes would cross as they were trying to focus on something that was close to her. She wears glasses (just so cute...) and now realizes that she can see with them and will ask for her 'eyes' when she wakes each morning. My thoughts and prayers go out to each and every CHD baby and their families. We are blessed to be given these sweet innocents to enhance our lives. It is a hard row to hoe as they say but oh the joys. I have learned so much about patience, faith and courage in these past couple of years. We pray that the next cath/surgery for our little girl will be successful and that we have her in our lives for many years to come. God bless your family.